October 2014 Surgery Sisters

Swoobs, I understand why you're confused. I don't know much but I thought the hormone (estrogen/progesterone) status was completely different than the her status. The her test was a totally seperate test. That is confusing! I know I'm hormone positive (highly) but her2 negative. As I understood it, herceptin is used for her2 positive. You are NOT alone!! Don't be afraid to call someone and tell them you're confused. The MO was the one who explained all of this to me (along with the actual reoccurrence rates) and you haven't met with them yet right? I'm sure they will have a plan for your situation and will clear up a lot of your questions. Hang in there and remember, your lymph nodes are negative which is still good news to focus on. (((Hugs)))

Fourminor - I am thinking about you. How is your pain? Have you been able to get on top of it? This may sound crazy, but do you have someone who could give you a really good leg/foot massage? Sometimes relieving the stress from the rest of our body helps relax all our heightened receptors and allow the pain meds to work better. That's the Nurse Midwife in me talking... :-)

Ladies - I have the big appointment with my MO tomorrow. Taking both my husband and, if I can get her out of bed, my MIL with me so that I am sure to get all the information needed. I'll let you all know how that goes.

Although I am feeling better today, I still have this really dark cloud over me. Although my parents-in-law have been fabulous and flew out from Florida to help us out for 3 weeks, I feel very abandoned by my own parents. My mom left us when I was 4 years old and has not been a part of my life since. My dad has usually stepped up to the plate in times of serious crises. However, for this breast cancer....he has not been here for me at all. He didn't come to my first surgery on October 28th - instead he sent his girlfriend (whom I really do not like). He promised to come up the following weekend - no show. I called him on Saturday after my node surgery and asked him to come up and watch the Bronco game with me. He hemmed and hawed and lied, stating that his car wouldn't make the 1 hour drive. I suggested he come up with my aunt and uncle... well, they came but he did not. Last night when I was crying, my MIL told me to not be a victim, but to feel sorry for and pray for my dad because he is screwed up. Sure. No problem. But it still hurts like crazy.

Sorry to vent - sometimes life is just too overwhelming.

I appreciate all of you so very much! Never thought that this type of relationship would really have an impact - but it has and I feel truly blessed to be a part of all of your journeys, through the highs and lows...it truly is a sisterhood.

Love,

Robyn - the Akitagirl

Atiikagirl awwwww that is awful....yes it's his loss this is true but it hurts just the same....hugsxxx I think that cloud you feel is okay considering I feel the same one it's the cloud that's going to turn this from a nightmare into a reality so that we can build strength to deal with what's next......whatever that is more surgery ,chemo or hormonal therapy.

Gentle hugs to all my sisters today xxxx

Hi everyone! This journey makes it so hard to stay positive. I know I have tried so many times to pull myself up for results only to get the news I didn't want. Then I thought why ... I don't understand. How can this be happening? Some of us are having similar issues and I think we are all dealing with levels of pain and uncertainty and we are all definitely trying to get through this BC as best we can! Big gentle hugs to all of you

I personally just want this part to be over and move on to the next one. And please let it be as pain free as possible!

Well said Sharpei! Thank you!

Good luck tomorrow Robyn Akitagirl.

Sue

Last year in July when I was diagnosed with breast cancer it was the third strike of 2013. My tight group of 10 friends had been there for me when I had a brain stem stroke in January and had to quit my day job cold turkey as well as stop teaching 8 fitness classes a week. My husband and I had to stop teaching ballroom dance, leaving our current class of 25 couples in a lurch and a very disappointed waiting list. I couldn't do much but my friends stepped up. A month later when I was diagnosed with a large aneurysm in the ascending aorta of my heart and facing open heart surgery, I noticed very few seemed sympathetic but most treated it like I had just said I had the flu..no big deal. Aortic aneurysm is exactly what killed my grandfather and uncle and for all I knew, it could rupture tomorrow. On top of not being able to see very well and not able to walk unassisted, this was devastating news and I NEEDED my friends but some had already slipped away, a few seemed uncomfortable around me, and some others suggested I should have been back to normal by now...like I was a hypochondriac. A few months later when the breast cancer was found, the whole group was back for a supportive brunch with plenty of hugs and promises. BUT of the 10, only 3 stuck with me and one of those was in contact only sporadically by phone. It was devastating. I was incredibly hurt. Fortunately I was able to see a therapist who helped me understand what was going on.

No matter how much some people love you, they cannot be around people who have a medical issue. They want to but can't force themselves to be in contact. Some can deal with it by phone but will never show up at the hospital or stop by to see you at home. Others might send a card, but don't expect a phone call or even a text. This is even more common when the diagnosis is cancer. Intellectually people know it's not catching but subconsciously they are in fear for their lives. Out of sight is out of mind...and peace of mind for some.

For family who live with you and have this aversion, it's really difficult. Your husband, for instance, may help out after your surgery around the house but cannot deal with your drains. Some absolutely cannot see your incisions and avoid you when they can. One of my adult daughters who lives in Florida, calls but discusses everything except health issues until the end of the conversation. My other daughter who lives in Chicago, flew down to be with us for my first surgery and calls all the time, asks questions and is as supportive as you can be. My 29 yr old son who lives here in town seems embarrassed and uncomfortable. He comes around but just says hi and I can tell that's all he can handle. My husband is a jewel who is there for everything, has come with me for every single appointment, rehab session, treatment, and test. He is in charge of drains, bandaging, bathing, medications, vital signs, etc. He does all the cooking, cleaning, and shopping too. (No, he's not for sale and no, he doesn't have a brother.)

Finally, the majority of people who are compassionate and helpful still have limits and can develop what my doctor calls "sympathy fatigue."  That's what happened with 8 of my 10 "besties." It was the third strike in a short amount of time.They had depleted their available storage tanks, some quicker than others because it was cancer, after all.

It's a year later and the 10 are all back. No one has ever discussed it and I certainly won't bring it up. I learned to forgive the things they cannot help and enjoy them all again, but not to expect support in the future or become depressed again. It is what it is. I do not discuss my additional surgeries with any except for the two who were with me through thick and thin.

I'm feeling pretty blue now. I saw the radiation oncologist today, he said that my chance of recurrence without radiation is 30% and with radiation 2%. He said that even if my nodes had been clear I still would need the radiation because of the grade my tumor was. Even though there was not a trace of the tumor left after my mastectomy. He said that the most common place for recurrence is the muscle wall, the skin and the nodes going up to the neck. Which means for me that radiation would cover my entire breast. According to him the chances of radiation affecting or harming my implant is very rare...he's never seen it personally (maybe because women knowing they're facing radiation don't get immediate implants?). Are there any other side effects?..."not really." Seriously? "You just need to keep in mind that without radiation you have a 1 out of 3 chance of having your cancer come back." "Oh, so my 30% just went up to 33.3%?"...this got a huge eye roll and sigh of exasperation from him. He also wanted to do an exam, I asked him why and he said he wanted to see how I was recovering. I told him I had a follow up with my BS in two days and thought that she, being one of the surgeons, was better suited to see how I was healing.

Do I sound like I was a bitch? I didn't like him. At all. He reminded me of George from the Seinfeld show.

SCMom, can you go see another radiation oncologist? No one wants to be told what to do by George Costanza. We all deserve to be treated by medical practitioners who we trust, who make us feel comfortable, and who give us information but then let us make decisions based on our own best interest.

Robyn, thank you for sharing how you're feeling. I'm glad to hear you're through surgery but am sorry you're struggling. The world needs strong women, but sometimes people forget that strong women need to lean on others sometimes, too. We're all here for you.

Swoobs, hang in there. I'd be confused too if I were you, but hopefully things will become clearer when you talk to your MO.

Fourminor, I hope the pain improves and that work is bearable.

Sandra, your insights are always so helpful - and I laughed out loud at your "no, he doesn't have a brother" comment.

Sharpei, I love the way you express yourself. I feel like I am meditating when reading your posts.

Thank you all for this group.

SCmom, well crap. Just what you DID NOT want to hear. And crap, crap, crap...that doctor is full of it. You need to talk to some of the other sisters who've been through radiation. The one radiologist I talked to was telling me radiation would fix me and not cause other problems. When I started reading more about it, I realized he was SO wrong. If we have to have it, I'm glad it's available and there is no doubt it is an absolute lifesaver, but don't blow smoke up my a** telling me there are no side effects I should be concerned about. How hard will it be for you to get a second opinion? What kind of cancer do you have? I see stage 2 so I'm guessing IDC or ILC.

My PS said he only gives implant reconstruction a 50-50 chance of success in women with radiated skin. More and more docs are doing pre-reconstruction fat grafting to radiated skin with great success and of course there are other procedures available. But for a doctor to blow off my concerns made me want to run the other way. I don't blame you for shutting him down. We women have that sixth sense that tells us when something isn't right.

Thank you my friends, I'm definitely will be asking my BS for another referral when I see her on Wednesday. I LOVE my BS, I ADORE my MO and I really like my PS...I got lucky with those three!

Sandra, I don't even know what kind of cancer I have (yeah, I know!) so I was just looking at my pathology report. Micrometastatic Ductal Carcinoma in the nodes, is that a kind of cancer? Or Most Consistent with Lobular Carcinoma in SITU (left breast where the chemo destroyed the cancer?!). I've learned that ignorance is NOT bliss but obviously I'm still subscribing to it!

hummingbirdlover, I was told at the start that I would need radiation, I even briefly met today's oncologist back in May for a "meet & greet." But after my tumor disappeared I was told that with a lumpectomy I would definitely need radiation, with a mastectomy only a chance of it. And I'm not a hero silly! For me this surgery thing (and the weeks leading up to it) is way harder than chemo!

Sandra, I don't like your PS's odds for implants...but I'm not surprised one bit. It makes sense to me now why OceanSky's surgeons wait 10 days after the BMX to put in the implants.

Change of subject, I have the utmost empathy now for those of you with TE's. Saturday night, 2 days after getting my drains out, I decided to indulge in a nice bubble bath...to the waist up only of course. I ripped off the gauze covering the holes where the tubes were, and took off my nice snug sports bra...the one that holds everything together. At this point the numbness has worn off except for my left armpit and the surrounding area. I got into the bath and started having a panic attack. Everything, my entire chest, felt so tight. I felt like I couldn't breathe, and it felt like if I moved my skin would rip open. An Ativan and a tight sports bra back on made me feel better though. I still have had many times when I've reached too far, or the wrong way, and had a horrible pain like I tore my skin. Can you rip stitches out doing this? Is this why a few of you are dealing with open wounds?

Hummingbirdlover, I'm sorry but I don't know if that pain is normal but I'm sorry that you're having it. Neither my BS nor PS told me to do any exercises...I was just told today by the RO to start walking my fingers up the wall! How many times a day do you do it, and for how long?

Oh wow, how soon after surgery did you start these Hummingbirdlover? It does sound really painful. I better get on these right away. Well not tonight. Tomorrow. Maybe

Oh whew, I thought maybe you'd had to do them starting right after surgery. Is your BS sure you can't tear anything? This scares me

@Akitagirl,

This is my 2 cents:

Not all wine gets better with age.

Same thing with people.

Cats however always improve.

Take it from someone who DID tear internal stitches a few weeks after getting a TE, you CAN hurt yourself. I was trying to get a sports bra off and got stuck in it, in a dressing room in a department store, with no one around to help, and an announcement over the intercom saying the store would close in five minutes. Somehow I got it off but I HEARD and felt something like Velcro ripping on my left side. PS said I had managed to tear a suture. My left side had lovely black and blue bruises on it. Let's not even talk about the pain involved. My recovery was set back several weeks. I've read a few posts from others who did similar things to themselves so while it's not exactly common ('cause most people have more common sense than me) it can and does happen.

On the TE thread, Galsal, who was in a fender bender, had surgery two weeks ago because her TE ruptured. She just posted the post-op report which said in part, "the expander is taken out removed, also the sutures had been totally ripped free from the chest wall that had anchored in three positions. "

Obviously that was 1,000,000 times worse than getting stuck in a sports bra and it's unlikely you will experience something that can rupture your TE. There is a big difference between stretching and stretching to the point of pain. Your body is trying to tell you something. It doesn't seem wise to take pain drugs to mask those warning signs. I'm obviously not a doctor so maybe there is more to it than the usual situation where we are told to do very gentle stretches after a few weeks of healing and progress slowly, stopping if there is pain.

Hey, by the way, I just got a post from Genie saying they have those zip front styles for I believe $10. I ordered six more cami shapers last week. Can't beat the 6 for $60 deal + free shipping.